What color ribbon does imaginary cancer get?

In the news over this past week there have been two stories of women who faked cancer for monetary gain.  One  who faked breast cancer will be spending a year in prison with her new implants.  Hope it was worth it. In a conversation recently about this I suggested she should have been sentenced to a few rounds of chemo.  I wanted to suggest making her volunteer in a breast cancer clinic, but can you imagine being a patient with actual cancer and having that around?  I’m guessing it wouldn’t end well.  Then yesterday I saw another story about a woman faking bladder cancer.  This one got a wedding paid for by friends and family.  She was ultimately turned in by her own sister who was worried about her niece and nephew. Can you say “emotional abuse” boys and girls?  Another one back in April got her dream wedding after lying about having leukemia.

Scamming is nothing new, but scamming your own friends and family?  And letting them believe you are dying?  I can’t wrap my head around it.  Less than a week after I was diagnosed we got word that someone who I have long considered family had ovarian cancer. I can honestly say I cried over that more than my own diagnosis.  I prayed for her and asked everyone who offered prayers for me to do the same.  I asked after her often.  Ultimately it came out that it was a lie.  I wish I could say I was stunned, but I had been suspecting it for a while.  I am relieved that she is not sick. I’m happy she will not leave behind a son and grieving parents.   I kind of tabled my reaction because I was fighting my own battle and because I honestly wouldn’t know what to say to her family/friends, but now I don’t mind saying I am beyond pissed. Yes, I know it’s not really any of my business. No, I wasn’t personally affected, but someone who I love deeply was.  This person was devastated by the news that two people he loved had cancer and he couldn’t do anything about it.  He was living and working in another state while his heart was here. While I was downplaying my own struggles at the time out of a desire not to cause more stress and anxiety for those I love, she was taking the other road… causing needless stress and anxiety. I don’t know what her motive was. I don’t know if there was a pay off.  It really doesn’t matter at this point.  Some things can never be undone.

Sometimes people just suck.

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No going back now

I have been saying since my hair came in (first white, now a mix of gray, silver and black) that I was done with coloring. It is what it is. After nearly a year of harsh chemicals flooding my body, radiation and a five year commitment to Tamoxifen and all of it’s lovely accompanying side effects, I’m just not feeling the urge to slather smelly color on my head every 4-6 weeks. For that matter, I’m not going back to many of the products I’ve used in the past.  During radiation I started using Tom’s natural deodorant.  Once you get used to not smelling like a meadow at sunset or a tropical beach it’s not so bad. If it’s safe to use during radiation, I’m good. I am slowly cleaning out my environment as well as what goes into and on my body. Will it prevent a recurrence?  No idea. Did I get cancer because of my dying my hair and using deodorants with aluminum and parabens? No idea.  I’m even cutting back *gasp* on alcohol.  Okay.. that’s not that hard. I drank very little through the months of treatment and after an emotional week around my sister’s birthday when we had several evenings out, averaging about 2 drinks a day,  I really felt kind of sick by the end of the week. I don’t have to be hit over the head with a swizzle stick to know why. I’ve given up diet soda and my caffeine intake is pretty minimal.  My diet was pretty good otherwise, lots of fruits, vegetables, grains and protein but there is a lot of room for improvement (always).

Oh yeah.. back to my hair and the reason for this post.. the reason there is no turning back now is my license is due for renewal this week. Yeah.. I get to have my picture taken at the DMV while just getting my hair back after chemo.  That’s gonna be a whole lot of forehead.  DMV photos are so lovely to begin with. This should be good. I could renew on line but I haven’t looked like my last photo (2006) in a while and never will again. My hair is long and black. I was about 25 lbs heavier. Anyway, feel sorry for the clerk, I will have no shame in playing the cancer card to get her to take my picture over (and over if need be) if it’s as bad as I anticipate. Wish me the DMV luck.

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What I would tell my providers….

.. if I weren’t such a chickenshit  so unwilling to distract them from the very important work of saving lives. 

First of all, if you are part of a “team” caring for a patient, then please pass on all pertinent information regarding that patient’s care to the rest of the team so that she doesn’t have to repeat herself ad nauseum. In my case, as far as I know, my labs and test results were shared, but other things that certainly impacted my emotional well being, if not physical, were not. Or they were and having me repeat them was some kind of test of my mental/emotional status.   The latter is being generous and I’m guessing it’s more the former.

Please read my chart occasionally. Just before a visit would be awesome if you can fit it into your busy schedule.  If YOU sent me for testing you should be looking for those results.  If I have to ask if you’ve received them and you have to go rifling through the chart to see if you have, it makes me feel a) the test wasn’t all that important to my case, so why the hell did you send me for it (at the tune of $4,000.00 I might add)? or b) you’re just not all that interested.  I realize I am not your only patient. I am not your sickest patient. I have the “run of the mill” breast cancer that elicits a big ho hum in the world of cancer treatment, but for the 15 minutes I am in front of you I should damn well be your only patient.  And you should be as prepared for my visit as you expect me to be.

If you are leaving your practice, a mention to your patients would be really good form.  When I got my diagnosis I was assigned to a team of 3 doctors. Two of the three of you had been here for only one year.   Having lived in this area my entire life and worked in the medical field (first in the  hospital where I receive treatment and then as a medical transcriptionist) I am familiar with most of the doctors, at least by name and specialty.  It would have been comforting to be sent to a surgeon with a long standing practice, however I was very happy with you and you did a great job. No complaints.  Except. You’ve apparently left the area. This is after telling me that if I had any problems in the future I could forego the referral route and just make an appointment.  You told me my followup would likely be with Medical Oncology and there was no need to see you on a regular basis but I could (and probably should) check in yearly to remain active in the practice.   I only found out you had left when my Radiation Oncologist mentioned it.  In hindsight, when I had my port out you said “No need to come and show me the scar. You never have to see me again”.  Okay then.  While I make it a policy not to get emotionally attached to someone who tells me I have cancer, a quick note from your office manager would have been nice. If I do have further need for a breast surgeon I would hope I wouldn’t just be passed off to whoever happens to replace you.  No offense to the newbies, but in the future I want a surgeon who has been here longer than five minutes and plans to stick around.   Same goes for my oncologists.

And oh, the breast care navigators. You nurses are wonderful. You are available anytime  we need to talk.  You come and hold  our hands through difficult tests and procedures.  You run support groups.   I’m not someone who would normally avail myself of a service like this. It’s not that I am unappreciative. In fact, having my hand held during my second biopsy and sentinel node mapping, not to mention getting a phone call immediately after hanging up with the doctor (who delivered my diagnosis over the phone, btw, and only afterwards thought to ask if I were alone) to make sure I was okay was more helpful than I can express.  However, sitting me down less than 24 hours after I received the news I had breast cancer and going over such things as drainage bulbs, tattooed nipples, and the importance of knowing how to draw on eyebrows, complete with a demonstration of how alien like I would look without eyebrows by holding your two fingers over your own, was not only unnecessary (in my opinion), but unwelcome. I may have been looking at you intently and nodding appropriately, but in my head I was screaming “what the FUCK!”.  I can’t speak for other women, but at that point in time I only wanted to know if I was going to live.  Without knowing whether or not I would need a mastectomy (I didn’t) or chemotherapy (I did), much of that information was not pertinent to my case at all.  Once my course of treatment was decided would have been the more appropriate time to discuss the things that applied to me. I should mention the nurse who held my hand and spoke with me over the phone was not the same who sat down with me.  I have no idea if it would have been different speaking with her.  Two completely different personalities.  

I don’t want to make it seem like I am ungrateful for my care. I’m not.  I feel like I got the best care available to me.  My questions were answered and I tried to answer yours as truthfully as I could to aid in your care of me.  However,  I’m not someone who wears their heart on their sleeve or complains about physical discomfort. Outside of members of my immediate family, if anyone asks how I’m doing 9 times out of 10 I will say “fine!” no matter what is going on with me.  I don’t complain about things that I consider minor or things that you, my doctors, have told me to expect and how to deal with.  So, when I fill out those questionnaires at the start of each appointment and mention something like daily nosebleeds for 6 months straight, brain fog, exhaustion, etc..if you brush it off, I won’t mention it again. That doesn’t mean my course was “easy”. I know compared to many people it was easIER, but trust me, it wasn’t easy. Not by a long shot.

A royal fuss

So much angst over Kate Middleton exposing her breasts in public. And by public I mean any place a high powered lens can invade your privacy.  Last week it was Harry’s ass.  This week Kate’s breasts. Why does it seem like this is so much worse?

The magazine who printed these should simply photoshop pink ribbons over Kate’s nipples and call it a PSA, just in time for the pink washing of the world that was formerly known as October.  God knows, we need more fun pictures depicting breast cancer.  Kate will be redeemed and the magazine can cash in on breast cancer.  Win/win.

Here. They can use my ribbon. It even comes with a pretty little chain of daisies.  Fun and feminine!

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This makes me think of how breast cancer awareness ads always show perky young, blemish free (heavily photoshopped?) breasts and when someone dares show what a real breast with cancer looks like in an effort to educate women it’s deemed “shocking” and comes with an accompanying warning.  Really? A warning?

A different 9/11 remembrance

While the rest of the country is reflecting on this day 11 years ago my thoughts have been on my sister. Today would have been her 52nd birthday had we not lost her two months ago.  As unreal as it seems that 11 years have gone by since we were brought to our knees by an act of cowardice by terrorists, it is equally unreal that yesterday marked the 2 month anniversary of when this family was brought to its knees.   I talk about Debbie in my blog of 7/21 when the shock was still fresh.   I had to recount to yet another medical provider the facts of her illness(es) and death yesterday.  I’m beginning to think my expectations of the medical community are unreasonable.  While I know they share information regarding my treatment between them, not one doctor has included the fact that my only sibling died unexpectedly in their reports.  Yet, they all want to be kept abreast of changes in family medical history.  Annoying is an understatement.

Today is exactly the kind of September day it was 11 years ago on Debbie’s 41st birthday when America changed forever. Bright sun, impossibly blue skies, cool air.  A perfect day for remembrance.  In a bit some of her family and friends will gather. We’ll visit the cemetery and then have dinner together and celebrate.  Not everyone can make it but those of us that can will raise a glass and remember.